Cancer Registry: A Field of Highly Specialized, Certified Professionals

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Registry Partners

Public Law 102-515, Cancer Registries Amendment Act (1992) requires all practitioners and facilities to collect and report cancer data on all patients diagnosed and/or treated for in situ and/or invasive cancers, as well as benign neoplasms of the central nervous system. 

With all the responsibilities on the plates of practitioners (and the facilities that employee them), how do they manage to stay compliant with public health law 102-515? Insert Certified Tumor Registrars (CTRs). Hmm. Certified. Tumor. Registrar? Don’t worry! This leaves most who are not in the oncology analytics field scratching their head in wonderment, or assuming a CTR is trained on intake of cancer patients in the oncology setting. In actuality, a CTR is highly specialized and certified in the abstraction and analyzation of cancer data. The curated cancer data is then reported to population based registries (PL 102-515) and used by researchers, as well as within hospitals. Recipients of the stringently curated data evaluate incidence, trends, efficacy of treatments, etc. for advancement in patient care and outcomes. 

You might find yourself wondering exactly what type of data is collected and how is that done? CTRs extract information from medical records from the time a patient is diagnosed with cancer, through their work up, treatment, and then “follow” their outcome until the patient is 100 years old or deceased. CTRs enter this information into an abstract using cancer registry database software. Sounds easy enough, right?  Well..not exactly! On average, there are 150-200 data points collected within an abstract. Each field/data point has a specific set of rules and guidelines, set by industry standard setters, that a CTR must follow in order to accurately populate the field to consistently provide high-quality and reliable data for research. 

Various organizations have set standards for the collection of cancer data and agreed (mostly) to a standardized format so that all data is collected in the same manner. The following organizations are standard setters that have “rules” and guidelines that CTRs must adhere to for various data items collected: 

  • North American Association of Central Cancer Registries (NAACCR): Develops uniform data standards for collection, including required fields per standard setter and logistics such as assigning each data field a unique number, field length (for database software), metafile editsets, etc. NAACCR also aggregates data and provides statistics from State Central Cancer Registries data
  • American Joint Committee on Cancer (AJCC): Cancer staging with assignment of Tumor, Lymph Nodes, Metastasis (TNM) values and corresponding stage group
  • Surveillance, Epidemiology, and End Results (NIH/NCI/SEER): A program of NIH’s National Cancer Institute (NCI)
  • National Program of Cancer Registries (CDC/NPCR): A program of the CDC. Sets standards on cancer data collection for states and territories; provides funds to state central registries. Uses data to measure progress, prevent cancers, drive action, and improve cancer treatment
  • Collaborative efforts (by multiple standard setters) led by NAACCR
  • Accreditation Programs: Facilities in these programs are designated programs of excellence, as they follow stringent rules and collect additional data fields
    • American College of Surgeons (ACoS) Commission on Cancer (CoC) : Provides tools, resources, and data that enable cancer programs to deliver comprehensive, high quality, multidisciplinary, evidence based, patient-centered care to patients with cancer
      • Standards for Oncology Registry Entry Manual  (STORE) CoC accredited facilities must follow the guidelines for cancer data collection within this manual 
      • Optimal Resources for Cancer Care (CoC Program Standards): CoC accredited facilities must follow the guidelines for cancer programs within this manual
      • National Cancer Database: Clinical oncology database sourced from hospital registry data of accredited programs. Provides programs with comparative benchmarks &  reporting tools for quality improvement, quality assurance, and surveillance measures
    • National Accreditation Program for Breast Centers:  Accredited facilities deliver high-quality care for breast cancers. NAPBC sets standards, provides quality measures. NAPBC facilities offer participation in clinical trials, and more,  including professional education and patient advocacy along with benchmark comparisons
    • National Accreditation Program for Rectal Cancer: Based on successful international models that emphasize program structure, patient care processes, performance improvement, and performance measures. NAPRC establishes multidisciplinary teams and research-supported protocols. These accredited facilities collect specific data and track processes and patient outcomes and must adhere to evidence-based procedures including total mesorectal excision, pathological assessment, and MRI staging and reporting.

Being a CTR requires diligence, intellect, superior critical and objective thinking skills, problem solving skills, phenomenal attention to detail, stark  investigational skills, excellent multitasking skills, and so much more. This profession allows those who have always found the healthcare field attractive, or have a clinical background and no longer wish to be in a clinical setting, to use their education and skills in a way where they are still making a difference in patient outcomes. This field challenges us to always show up and do our best, because others are counting on us to “get it right”. It’s incredibly rewarding to know you are contributing to prevention efforts, more effective treatment options,  and better patient outcomes. Seeing statistics posted and knowing those numbers are the fruits of your labor is incredibly gratifying, to say the very least. For those interested in joining the  5700+ CTRs (soon to be ODS–Oncology Data Specialist) worldwide, you can learn more here. 

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Illustration by NatalyaBurova on iStock